For Father’s Day, Let’s Honor Men With Fibromyalgia

For Father’s Day, Let’s Honor Men With Fibromyalgia

By Ginevra Liptan, MD

Ginevra Liptan, MD

Ginevra Liptan, MD

Editor’s Note: Ginevra Liptan, MD is both a fibromyalgia patient and physician specialist. Her new book The FibroManual: A Complete Fibromyalgia Treatment Guide for You…And Your Doctor is available now.

Fibromyalgia is much more common in men than previously thought. Historically it has been considered a disease that mostly affects women, with men thought to represent only about 10 percent of fibromyalgia cases. However, newer studies suggest it may be three times higher than that, with males making up at least 30 percent of all fibromyalgia sufferers.

Based on what I see in my fibromyalgia clinic, I think this higher percentage likely is true. Which begs the question: Why have we vastly underestimated how many men have fibromyalgia? It turns out the way we have been diagnosing it since 1990—a tender point exam—is not as accurate in men. To be diagnosed with fibromyalgia from a tender point exam requires tenderness in at least 11 of 18 specific muscle areas. But this test was developed from studying women! Newer research shows that the men with fibromyalgia tend to have less tender points than women, and require much more pressure to elicit a pain response. This means the tender point exam often going to miss the diagnosis in a man.

In 2010, a new way to diagnose fibromyalgia was developed that eliminated the tender point exam completely and was instead based on symptoms. These symptoms include widespread pain, fatigue, waking unrefreshed from sleep, and brain fog. Hopefully these newer criteria will give us better tools to diagnose fibromyalgia in all genders.

In addition to these missed diagnoses, there are other areas where medicine has fallen short for men with fibromyalgia. Most fibromyalgia research studies have excluded male subjects (so there is more uniformity among studies)—there may be treatments that work better or differently in males, but we just don’t know.

But in light of these newer studies that men might represent a full one third of all fibromyalgia patients, it is time to change our thinking. The stigma associated with having fibromyalgia is real—that is why I half-jokingly call it the F-word of medicine. But for men with fibromyalgia that feel they have a “women’s” disease, this only adds to their suffering.

Let me tell you about one of my patients, a quiet, thoughtful man in his late forties that I will call Kevin. He spent much of his adulthood in the military and was deployed several times. Around age 30 he began dealing with persistent fatigue, muscle pain, and depression, and was ultimately diagnosed with fibromyalgia. His wife is frustrated he can’t work or do more around the house and struggles to accept his illness. It is an ongoing battle for him to have his illness included in his Veterans Affairs Health Benefits. He and I repeatedly have had to argue with them that he does indeed meet a diagnosis of fibromyalgia and that it was likely triggered by his combat experiences. In fact, fibromyalgia is very common in combat veterans. In one study almost half of the male patients with combat-related PTSD also had fibromyalgia.

Along with being aware of the diagnostic difficulties, as a provider caring for male fibromyalgia patients there are a few other key factors to keep in mind. Nearly half of male patients with fibromyalgia also have obstructive sleep apnea, a common sleep disorder caused when the soft tissue in the back of the throat collapses and blocks the airway, stopping your breathing. Because this is so common in men with fibromyalgia symptoms, I refer nearly every male patient for a sleep study to look for it.

It is also useful to check a man’s testosterone level, particularly if he is taking high daily doses of opiate pain medications. For men with fibromyalgia, low testosterone levels will exacerbate their symptoms, and unfortunately long-term use of high doses of opiate-based pain medications can suppress testosterone production.

One study found that 74 percent of men on high-dose opioids had low levels of the hormone. And if testosterone is low, it is worth considering hormone replacement as it can really improve symptoms of fatigue and muscle weakness that are worsened by low testosterone.

One last point: We need to get away from thinking of fibromyalgia as a women’s disease, as that only compounds the problem. And as further medications and treatments are being tested for fibromyalgia, it is time to start including men in trials.

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Authored by: Ginevra Liptan, MD

There are 7 comments for this article
  1. MichaelL at 10:38 am

    As a male physician, with the symptoms of fibromylgia since my thirties, I became an expert. Patients thought I was a near genius, because I could identify the trigger points with ease! I met a few male patients with the thought put in their heads that males did not get fibromyalgia! They welcomed the correct diagnosis. I know how hard it was until mine was sorted out!Sadly, I was pushed out of the practice of medicine by the same petty doctors that complained “You act like you think that you are smarter than us.” That is a different subject. But, it was not an act! Higher levels of education can be detrimental to practicing with lesser educated physicians! Being more compassionate and observant seemed to be very helpful to me.

  2. Kelly at 10:17 am

    Excellent post and I nearly thought you were talking about me. As a guy, with a female name, fighting a disease that is perceived as one that only females get, it has been quite the ordeal for me over the last 16 years. I am a former Marine infantry. I am fighting the VA about disability benefits as well. I am over 3 years in to the process, and working on another appeal. Thank you though for your thoughtful and meaningful post, and for helping to bring light to another aspect of Fibromyalgia.

  3. Roger at 5:28 am

    Thanks for a really encouraging article. I was diagnosed almost 20 yrs ago with FM and have lived with the symptoms that you mention – especially the testosterone issue. Still no closer to my GP’s understanding what to do but glad that men with FM is now being accepted.

  4. Christine Taylor at 8:14 pm

    I have never had a specific diagnosis of Fibromyalgia but got one for Chronic Fatigue Syndrome. I was puzzled about the lack of diagnosis for FM because the pain I experience sounds just how FM patients describe except my tender points are not always consistent and the pain can radiate. Then I discovered online about Myofascial Pain Syndrome and how it differs from FM. Sometimes my ribs hurt like they were bruised and sometimes they didn’t. Sometimes points were tender to touch and other times they would hurt without touching. Any pain that I had was amplified compared to before. If I hit my toe it feels much worse than when I had no issues. For no reason at all areas feel bruised but no evidence of injury is present. Sometimes just combing my hair hurts as my head feels bruised. Doctors would do the trigger point tests for FM but sometimes none were present and other times only a couple would be there. I seemed to feel pain on and off in all the areas that FM patients feel just not all at once. I have Auto -immune illness but my ANA was positive for a few diseases and they are not 100% positive which one so I am labelled as Undiagnosed Auto-immune Illness with Chronic Fatigue Syndrome and secondary illness related to auto-immune.

    http://www.medicinenet.com/muscle_pain/article.htm

  5. Steve at 7:57 pm

    An important essay. You had mentioned in a recent interview that you now realized FM affects all of the hormone systems. Since men have some different hormones, we may need different treatments, as you point out, though, as you also point out, virtually all med studies are done on women. I was diagnosed pretty quickly for 1990 medicine but may end up as the oldest suffering FM male as no medication, procedure, or gadget has helped me since that diagnosis. Now we are being scacrificed to a minority of drug addicts who, in truth, swallow the drugs and put needles in their arms by their own hand where we all woke up with fibromyalgia. As one smart writer said here recently, FM is not a death sentence but it is a life sentence.

  6. Dave at 7:00 am

    Honoring men with fibromyalgia requires being more respnsive to their stated needs and wishes. And the same goes for women as well.
    There is no honor when medicine decides what is best for men and women and ignores, minimizes, distorts, sublates, discounts, dismisses the voice of men and women with fibromyalgia and other painful condition.
    Now that the AMA has decided to eliminate pain as a vital sign- it is clear they don’t wish to hear from men or women about their pain. And they arent the only medical organization whose ears are dull of hearing and are waxing grosser to the needs of men and women and children in pain.
    It is unfortunate that medical professionals listen to medical research much more then they listen to men and women with fibromyalgia. I guess as the saying goes people stand in their own shadows and wonder why it is dark.
    Lets honor men and women with fibromalgia by listening to them and being responsive to them instead of researchers, medical boards, medical organizations and our own beliefs about what is good for them

  7. Doug Bedell at 3:45 am

    I have seen 13 doctor’s over a six year period and i still dont have a solid diagnosis of fibromyalgia.